Please Help me !!!!!!!!!!!

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mollykitten
mollykitten Member Posts: 33
edited June 2014 in High Risk for Breast Cancer

Hi, 

I was dx back on January 29 and had a lumpectomy February 21st. The results of the surgery were a  dx of early stage 1 BC, ER/PR + by 70%, tumor size removed about 1.5 cm, with 1 1/2 cm's of additional marginal tissue removed. All margins were clear of any cancerous tissue (good news.)      

I met with my medical onc on 4/2  for treatment consultation. At that time he recommended Dose Dense chemo for 2 mos.,  followed by radiation treatment, and then Tamoxifen. However, he also gave us an alternate treatment plan to go on Tamoxifen 1st, and start radiation at the same time, re-visiting DD chemo in 3-6 mos. 

After talking over both plans with my husband, and of course me being afraid of doing chemo,  I decided on plan #2: radiation and Tamoxifen 1st, followed by DD chemo after radiation was complete.

I started radiation treatment on 5/8 and finished all sessions by 7/2. However, during the course of radiation treatments I  was taken off of Tamoxifen by my medical onc and radiation onc, due the combo of both treatments making me too sick to handle radiation. Once I completed radiation I was put back on Tamoxifen at my next follow up with my medical onc.

On 7/9 I met with my medical onc for our post radiation follow up. At that appointment he stated due to the burns on my chest from radiation I would need to heal before starting DD chemo (makes sense.) However, he also added that as long as I was on "something", (meaning  a treatment for my BC and I was Tamoxifen), that I should be fine to wait on DD chemo until I was healed from radiation.   

After 4 days of being back on the Tam, I had a very rare but severe allergic reaction to it. Per my medical onc my reaction was not common, but has been seen before and can be potentially lethal. Therefore I was taken off the Tamoxifen- again, but this time for good.  At that same visit, my medical onc stated that at my next follow up appointment sched for September 3rd, we would need to re-visit DD chemo as by then I should be physically healed and strong enough too handle it.Well, I healed up from radiation, and had all my follow up tests (MRI, post rad mammo, and blood work), which all showed to be normal.

I went for my appointment yesterday expecting to be scheduled for DD chemo as my medical onc and I previously discussed. Much to my shock and dismay, my medical onc is now saying that it is too risky to do DD chemo or chemo of any kind, which goes against EVERYTHING he and I have discussed since all this began. I asked my medical onc how come all of a sudden, we can't do the chemo we have been preparing for ALL ALONG. His response:"it's  too risky now." with no clear cut explanation. I kept probing him as to "why?" How come now all of a sudden chemo is no too risky. he jusy kept saying it was, which makes no sense. I'm now healthy enough to handle it and my bloodwork and tests have all come back normal.  I don't understand his problem. I also have to add that both my husband and I noticed he seemed almost put out and unfocused yesterday: obviously not traits that you want to see in your oncologist who is supposed to be looking out for his patients well-being.    

Oh, I do have to add that he did remind me of my "good" dx  that I am only at 21% risk of recurrence ( like that makes it all better!)

Now I have done and followed everything that my medical oncologist has suggested and recommended. I am not only shocked by his response but also very angry. Did he not remember every conversation that we have had via in person and over the phone since our 1st consultation after surgery? I did and have the notes to back everything up. Also, as he requested, I am now physically healthy enough to handle chemo treatment. So where is the logic in his thinking?

I am a 35 year old women who is considered high-risk for recurrence and my current medical onc KNOWS this. I am just baffled and astounded at not only his lack of recent care, but also his overall "memory lapse"  and poor judgment.

I know that at this point a  2nd opinion is necessary. I have an appointment scheduled for tomorrow to meet with someone else, and hopefully pick up where this other "doctor" left off and finish my treatment. 

 I am doing the right thing by getting this 2nd opinion, correct? I feel like I am going crazy, and I just can't beleive that a physician can be this incompetent. I  understand everyone has a bad day here and there. But seriously, to negate almost an entire years worth of apointments and reccomendations on his part?

Has anyone else ever gone through the run-around with their oncologists or had to switch right in the middle of the treatment process due to poor service from their original onc?

 If anyone has ANYTHING to offer, please let me know. I can't believe any of this is happneing to me. 

Thanks.  

Josie          

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Comments

  • BMac
    BMac Member Posts: 650
    edited September 2008

    Dear Josie, I don't have experience with this but just as I was thinking you should get a second opinion you wrote that you are going for a second opinion tomorrow.  That's obviously the best thing you can do right now.  It's baffling that your onc has reversed his stance and refuses to tell you why.  I can imagine how unsettling this is for you.

    Take all your notes to the new doctor so you have all your information.  Good luck tomorrow.

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  • wishiwere
    wishiwere Member Posts: 3,793
    edited September 2008

    Wow, first off, I was surprised that you had 6 weeks between your surgery and the appt, then that they did Rads first (with tamox) b/c 1) Rads are normally given AFTER chemo and 2), I thought it was a given that tamox and rads were NOT to be done together (something about the way they can interact or soemthing..I really don't remember if this is true or I'm remembering incorrectly.

    Then they take you off tamox...has he mentioned doing an ooph?  Ovarian removal to decrease your estrogen and get you into menopause or the meds to make your ovaries not functions, so that you can take an AI?

    Something is Surely amiss...Not sure what, but I'd have been running for a second opinion really quick too! You are doing the right thing there, but to be honest...I wonder if they would do chemo this late or not?  I've never heard of it AFTER Rads?  Weird they did it that way.

    Let us know what happens are you 2nd opinion, k? 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2008

    Hi Josie,

    I understand that now that you've wrapped your brain around the concept of doing the DD chemo, you want to get on with it.  You want to get that second opinion, because you need to be able to trust your oncologist with your life, but you may also want to try to press your current oncologist about what specifically changed to make him reconsider the DD chemo for you. 

    Have you ever had an allergic reaction to any other drugs besides the Tamoxifen?  Do you have any circulation or cardiac issues that might be a factor?  He may have gotten information from one of your tests, or reactions to treatments that put you at higher risk from the chemo which might now outweigh the potential benefit.  There are many reasons that chemo may not be the best course for you, but you deserve to know the reasons that apply to you. 

    He may also have attended a conference, or taken a course, or read an article that shed new light on the the benefits/risks of the original treatment plan that prompted him to change.

    Could your insurance coverage be a factor?  Could they be the ones denying coverage for chemo at this point?

    When I was making my decision about treatment, I was told that they look to start chemo within 12 weeks of surgery.  Since you are now more than double that time away from surgery, the potential benefits of doing chemo at this point may be less than they would have been earlier in the process, and may now be outweighed by the potential risks.   

    I certainly understand your concern about wanting to lower your risk, especially given your age.  Were you able to overcome your surprise at his plan change enough during your visit to ask your current oncologist about the "new" plan that he would have you do instead of chemo? 

    Be prepared that your second opinion doctor may not recommend chemo at this point if there is an increased risk, or decreased benefit from your original prognosis,but you do want to have a plan in place, even if it is only something simple and basic like diet and exercise (since less fat means fewer hormones to feed the tumor).

    I hope that you get some good answers tomorrow,

    Pat

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  • spar2
    spar2 Member Posts: 6,827
    edited September 2008

    I am very surprised at your treatment because usually you have the surgery, do chemo, then either rads or arimidex or tamox.  Thank goodness you have notes and reports and are getting a second opinion.  Please let us know how you do and what this new dr. suggests.  No matter what we will be here to support you.  Sherry

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  • 1Cathi
    1Cathi Member Posts: 1,957
    edited September 2008

    Hi Josie,

    Your Rad & Tamox story mirrors mine my first onc started me on Tamox 2 weeks into rads, my hubby and I had read that that was not a good thing and questioned him on it, he said bluntly not a concern - he never had a problem (he is the same man who told us in his 20+ yrs he had only ever seen hot flashes and weight gain ad a SE) anyway like you I became violently ill, totally could not function, he took me off Tamox several times, he one day said to me as I was "complaining " again  -I had to choose between life and quality of life - take the tamox and deal with it or DIE basically.  Anyway I never went back to him and I have never taken Tamox again, I know from reading all the posts there are good caring doctors out there -I unfortunately have not found a single one yet, so I come here and vent, get knowledge and inspiration. 

    I wish you well.

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  • mollykitten
    mollykitten Member Posts: 33
    edited September 2008

    Hi,  

    Thanks for all of the responses.

    Tomorrow my husband is having a one on one with my current oncologist to get some clarity. We are also seeing another oncologist together in the afternoon for a 2nd opinion.

    This morning, I spoke with my both my breast health care social worker and my primary care radiation nurse regarding this sudden turn of events. Both were actually stunned at my current med oncologist's sudden change in decision, and could not believe it.

    My breast health social worker stated that she is not sure why all of a sudden my current med onc won't do any chemo at all, when all my husband and I have done is follow his exact reccomendations. She did add that it is possible that it might be too late to do DD chemo, but she is completely amiss as to why he won't do ANY chemo at all for this one reason: if there is even ONE cancer cell still floating around that was not caught by the localized treatment, surgery, and the short time I was on tamoxifen, that is what the chemo is used for: it is a systemic treatment used to kill ANY and ALL remaining cancer cells any where in the body. She also added that you don't want to "wait" until it comes back before you do chemo.  

    My rad nurse added  that there are times when the sequencing of treatment can be changed depending upon each situation. She also added that the bottom line is that no matter what order treatment is done in, you complete all of your treatment stages regardless. For instance, she stated that depending upon the situation ( and again she added each situation is unique), some people do chemo before surgery if necessary; sometimes people do chemo 1st then rad post-surgery,or vice versa. per my onc when I saw him in April, he stated that due to my "very good" diagnosis" he did not see why I could not do rad 1st followed by chemo. He was even saying this right up until our previous follow up appointment in July: heal up from radiation and at your next follow up get "on board" to do chemo. Well, I'm here, not happily willing, but ready.          

    Just an added note: I told both my rad nurse and my BC soc worker that when my husband and I went to see my current med onc 2 days ago, he really seemed to be "out of it." He was very forgetful. For instance, he  forgot that I had an allergic reaction to tam and could not longer take it and thought I was still on it (haven't been since July.) Then, he added that he doesn't do chemo in general for any patients. That is completeley false. Upon our initial consult with him back in April, he even took us to the area that chemo was administered to patients!!!!! Then it took my husband to prompt him to offer up any other solutions other than the chemo, which is when he said that Aromasin was a possible other option. However, this was ONLY offered by my med onc AFTER the prompting of my husband. My med onc also seemed very hurried and was running late the day we saw him. However, that is NO excuse when you  are supposed to be treating people with possible life threathening illnesses! You take your time with each patient, and if you can't make the time, re-schedule for when you do.

     Both my rad nurse and the my breast health soc worker agreed that something was definitely wrong, and stated if he was having a "bad day" he picked the wrong time to have it.   

    So, my husband is meeting with him tomorrow in am to get some clarity. We are both then going to meet with another med onc for a 2nd opionion. My BC soc worker already has the name of 3 aditional oncs if needed. Also, no other allergic reactions that I am aware of to anything other than tamoxifen.

    Don't worry, I will get to the bottom of this and  WILL also get the treatment I need to finish up this phase of my life and hopefully move on!!!!!

    Thanks to everyone for caring. I will make sure I update you as soon as I can. 

    Take care,

    Josie : )  

        

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  • PeggyDixon
    PeggyDixon Member Posts: 125
    edited September 2008

    We are thinking of you and waiting to hear your update.

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  • mollykitten
    mollykitten Member Posts: 33
    edited September 2008

    Hi,

     It's been a very busy past 2 weeks, and I am so sorry to not get back to anyone sooner.  

    After much discussion among my primary med oncologist, and after seeking out 2 add opinions, all agree on basically everything:

    1.    1. No more Tamoxifen ever!

       

       2. Because of the terrible reaction I had to the first hormone therapy, none feel it s safe to try me on another (including Aromasin, with Lupron shots) I can't say I blame them as I was not looking forward to possibly another "potentially lethal" allergic reaction to anything.

       3. 2 out of the three med oncs were in agreement that it is not too late to reap the benefit of chemo. Part of me was happy to hear this as of course I wanted some sort of adjuvant treatment. Then I started to realize, I got my wish, which of course then reality started to set in.  

    So, I started chemo yesterday. I will be on an 8 cycle regimen over the next 4 months. The first 4 cycles will be infusions of Adriamycin, and Cytoxan. the last 4 cycles will be infusions of Taxol.

    Per the two med onc's that agreed with each other, both believe that I will still reap a permanent benefit of the chemo which would lower my risk of recurrence to an additional 4-5%. That is good news as I fall into a what they call a "gray area:" Even though the tumor was caught early, removed with negative margins, node negative, and followed up with radiation, I am still considered higher risk for recurrence because of my age (35) and my tumor grade (2-3.)

    So, that extra 4-5% means a lot to me.

    I haven't slept all night, most likely nerves and the steroid they gave me to mix with the Adriamycin. I was told it would "juice me" up for the 1st day two.

    Thank you to all who have been so supportive for me in this specifically difficult time.

    I will make sure to keep everyone as updated as possible.

    Please take care of yourselves and good luck to everyone!!!

    Josie (formerly jomar7777)  

       

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    1. leaf
      leaf Member Posts: 8,188
      edited September 2008

      Sheesh!  What an ordeal to go through!  Thinking of you and wishing you well with chemo!

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    2. lolmarsha
      lolmarsha Member Posts: 107
      edited September 2008

      Happy everything is going smoother!!!!!!!!!!!!!!!!!  Good luck.

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    3. mtbmom
      mtbmom Member Posts: 135
      edited September 2008

      Josie-glad things are going better!  It's amazing sometimes what you get from a second opinion!  I too had a terrible time with Tamox.  My second onc has me on fareston, and the difference is amazing.  My other onc never considered going to fareston, he just kept giving me other drugs to counter the side effects-ugh.  I'll keep you in my thoughts- Denise

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    4. Mopsey444
      Mopsey444 Member Posts: 8
      edited October 2008

      What about having your ovaries out if you can never go on tamoxifen or an AI.  I had radiation on tamoxifen after having my adriamycin and burned very badly.  Can I ask how you are getting 8 cycles in 4 months, when I had the same treatment years ago they spread it out over a longer time frame, I had chemo every 3 weeks.  Thanks and hopefully the chemo goes well for you. 

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